In 9 years this is where you make your stand?
You have viewed a whooping 29 topics in 9 years and replied to 2.
Now you are going to judge this forum on a troll thread?
Wow!
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Well damn. I didn’t intend any hostility, for what its worth. Its usually pretty clear when I do though.
Not from you. I guarantee you have some funky incel shit going on with your hands and I don’t want any astroglide/smegma cookies.
But when my wife makes her oatmeal chocolate chip , totally!
Nah. 15 years and going strong, AZSean with 20- we’re definitely doing it right.
You on the other hand, I wouldn’t trade places with for the world.
What was your poison prior to EDS ruining your life?
MMA. Wanted to have at least one ammy fight. Training striking was annoying as is due to the shoulder instability and hip tears. I did a bit of grappling, but couldn’t do much since it felt much worse on my joints than striking.
My PTs’ responses to me wanting to restart MMA has been literal laughter to outright anger haha. A compromise we reached was me training MMA and doing hard sparring but not taking any fights. I’m fine with that.
Just about form of EDS can have fatal consequences… but vEDS is particuarly bad. @startingagain do you have stretchy skin
No overly stretchy skin, and during my diagnosis process they ruled out any cardiac issues with EDS. I forgot the exact wording they used, but thankfully, my issues seem to be all joint-related.
Finding a decent woman who would be ok settling down with someone who is infertile, someone whose body is actually falling apart due to a genetic, degenerative disease, someone who will require more and more care with age… monumentally difficult task unless I voluntarily withold the truth which I think is unethical
Isn’t the point of marriage to be through sickness and in health? Perhaps it’s because of my Indian roots, but a husband/wife taking care of their disabled spouse for decades is considered normal for us. If someone is crippled, we would consider it bizarre if their wife and kids aren’t taking care of them. My wife obviously knows about my EDS, but she is pretty traditional.
As for opioid addiction… I’m in Maine and I feel like half of my patients some days are stimulant or opioid addicts haha. Might as well claim “addiction” to get the meds you need.
.
Everyone has told me grapppling is much harder on the body.
But… all of my martial arts injuries came from striking. Shin splints, bruised ribs, black eyes, rotator cuff tendonitis, elbow tendomitis, labral tears in both hips, SI joint pain, nerve compression at wrist (required surgery), cut open my face from getting kicked hard.
Granted I was training striking 4-7x/wk and grappling 2-3x/wk
Either BJJ or freestyle wresting. BJJ classes were the fundamentals classes so it was mostly drilling with 15 mins of situational sparring at the end.
Freestyle wrestling was at a gym where my areas elite MMA fighters and grapplers (think olympic/commonwealth games level) went to train
I have a family friend who is at the top of the top for his discipline (freestyle wrestling).
Towards the end, when my shoulder was REALLY starting to bother me… I’d just opt for wrestling
Even though I’d have to do like… handstand pushups… wasn’t as hard on my shoulder relative to holding pads, sparring and missing a left hook or hitting the heavy bags.
Worst thing that ever happened to me grappling… I had the wind knocked out of me after getting thrown hard with a seoi nage (in wrestling believe it or not… guy used no gi grips) and I didn’t breakfall.
At the time I wasn’t particuarly informed of/educated on the risks associated with grappling
After watching videos of grappling matches now and understanding the nuances behind the techniques, footwork, applied pressure and use of leverage I actually can’t believe I didn’t dislocate something considering I was wrestling WITH numerous tears in my shoulder, my bicep and both hips.
Granted I didn’t spend that much time in grappling. Maybe 50 hours in total as opposed to 100’s for striking. Between 1-2000 if you count karate (I don’t… although we did spar).
I almost got my shodan at 15 though, with seven cumulative years of training. Was 1st kyu lol. SO close to black
Perhaps I was just lucky… perhaps the fact that I was able to deadlift 480lbs, bench arounf 265 helped prevent injury (bw fluctuated between 160-175) strength didn’t change from 160-175.
Not super strong, nothing worth writing home about. Though for someone with EDS I’d say it’s very good.
My physio said to me today that my strength standsrds are well above the vast majority of her EDS patiente
Rheumatologist also told me that my weightlifting likely helped slow my decline.
Martial arts def didn’t help. But controlled weightlifting was always my most effective coping mechanism in relation to pain management.
Do you STILL intend to train MMA?
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Do you STILL intend to train MMA?
Yep haha.
Since I’m not gonna be training for a fight, that gives me the freedom to avoid any painful positions/moves and go easy when I need to. I’ll base it all on how my joints are feeling that week. This obviously couldn’t be done if for some dumb reason I decided to take a fight. I’ll just add MMA as my 531 “hard conditioning” when my body is ready again.
This Richard Cooper guy, appears to be 24/7 angry. Each Twitter post is either him bitching about women, showing content of poorly-behaved women, showing content of men acting like “betas,” or preaching that all real men should strive to become psychopathic hustle-grind bro-cyborgs.
I have watched several of his clips and I’ve never ever heard him say one positive thing about women and solely speaks about them as if they are masturbation tools. After listening talk about how awful they are, I wondered why he even “coaches” men to get them!
Never have I heard him speak of finding a woman who can be a good wife or mother, an actual supportive life partner, or family formation. With him, it’s nearly all about having women for sexual satisfaction and having a rotation of them. In the cases he has spoken about marriage, again, it’s “woman is enemy”.
Maybe he has had other moments where he speaks differently, but I haven’t heard them. And yes, he offer some truth and basic life advice. Most PUA’s do.
He’s also freaking obsessed with bashing single mothers.
Many of them as if bedding down women is the ultimate achievement of mankind.
And just lol at the notion that a man needs to earn huge sums of money or wine and dine a woman simply to dip his wick if he’s not in the top 5%. “It’s different now because of dating apps.” While not from a dating app, the personal example I gave above was from a dating site, Match.com. I have other examples but will not give all, nor will I give details because that would be inappropriate. So the outcomes are implied. I only share this to show from personal experience that this is false in my and other average men’s cases. And it’s not like I even recommend this stuff at this point. I now strongly don’t.
One more example from a woman I met from the same site. She actually lived on the same street. First meeting: diner in our town. She treated me to the meal. Second date: her apartment. Total money spent: 0 dollars.
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Why not boxing? Or Muay Thai?
I ask because grappling is/can be particularly bad for MDI. Getting folded and twisted in the short term might not feel so bad for us as we are hyperflexible
But like a rubber band, bend it too much and the integrity of the band wears out… and never reverts back to normal. Unlike normal people, when we get injured… the injury is more/less permanent and/or won’t ever heal correctly
There’s a reason why it’s HIGHLY advised for women with EDS to never have kids. Maternal mortality rates are very high, and aside from that the rate of complications (miscarriage, joint dislocations etc) is VERY high. If a woman with EDS (esp vEDS) winds up pregnant, some docs will encourage the woman to get an abortion on the basis of
- women with vEDS are SUPER likely to die during pregnancy
- any type of EDS entails higher maternal mortality rate, high miscarriage rate, rapidly accelerated joint degeneration
- it is likely the kid will go on to suffer from the same genetic disease.
With boxing you could in theory do a smoker (unsanctioned fight). With Muay Thai or kickboxing provided you can tolerate the training you’d actually be able to complete. Less regulated… Boxing in many states/my entire country has banned TRT (even if you really need it). Unless you are trans which is fucking INFURIATING to think about.
Trans women (FTM) apparently matter more than men… trans men (MTF) apparently matter more than women.
You could also compete in BJJ. But as we are told to avoid yoga… does involuntary yoga sound like a good idea? (joking, BJJ isn’t as bad as involuntary yoga)
It’s a risk we are going to take. Statistics infer that we will wind up crippled regardless of what we do. By “crippled” I mean dependent on a mobility scooter, wheelchair, bracing, getting on a waitlist for numerous joint replacements or you find you are unable to hold down a full time job. 40% of hEDS individuals wind up on disability/welfare, more than 50% wind up being unable to hold down a full time job.
When I get to that point, which given how I am at 22 I imagine I have 15 years or so left… I have my plans. I’ve unfortunately had to re evaluate my future in it’s entirety now. The life that I wanted to live is no longer a possibility.
Now… If you do absolutely nothing and live a boring life, you might make it to say… 45 before you get to that state (different for everyone). If you lift weights CAREFULLY without locking out at end rom, you might give yourself another 5-10 good years. If you do martial arts, maybe 35-45. It’s different for everyone, depends on how much damage you’ve racked up
As specified, I have degenerative OA in my shoulder, both hips, potentially my knee and hand. I’ve had over a dozen surgeries throughout my lifetime and I have autonomic dysfunction that is seemingly progressive. Might be hyperadrenergic pots as opposed to IST alone.
I’m probably going to give martial arts one more shot WHEN I can get strong again. As specified, was very hard to get injured when I was strong, however getting as strong as I was isn’t necessarily sustainable. What is possible naturally for a normal person vs an individual with EDS differs.
However being strong like that and being active MASKS symptoms. The second I get injured and decondition not only do I fall apart (as has happened over the past year), but the damage that has been incurred over that duration of time suddenly rears it’s ugly head.
I think it’s worth it, as to me life isn’t worth living if I just have to lie down and/or sit at a desk all day absent of any adventure. But know… Living a life that would otherwise be seen as relatively normal for the average young adult hurts us say five fold + more than it does a normal individual.
Our collagen is actually defective. We are genetically defective… Notwithstanding the complications (albeit fairly rare ones) that could cause us to die at the drop of a hat. It’s a really nasty disease to have, the more you look into the long term prognosis/stats associated with it, the worse it looks.
Any amount of martial arts you decide to partake in… Be willing and ready to push through a LOT of pain. I’d say limit training to 2-3x per week. There’s a guy on reddit with EDS who is a competitive kickboxer, and another who is almost a brown belt in BJJ. I have half a mind to reach out to both of them to ask how they did it… I imagine they’ll be in for a WORLD of pain 10 years from now.
But I loved martial arts, I can see how someone would say “fuck it” if given this deck of cards as… no matter what you do, you wind up in a lot of pain.
@startingagain do you intend to undergo regular cardiac monitoring? Heart problems can more/less pop up out of the blue for people like us. Ditto with severe, potentially paralyzing craniocervical instability
fuck I’m so sad about this… haven’t gotten out of bed this weekend… Need time to grieve. This is not what I signed up for…
They should stay busy and tired. So busy and tired that they never question the guru.
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If I may…
You’re obsessing over this in a very bad way. When I felt like this after the heart failure stuff it was time to talk to a professional, which I did, and it helped tremendously.
What are your thoughts on that?
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I’m 100% on board with what you are saying.
I’ve just started seeing a psychologist
thank you for the kind words.
I just couldn’t believe it… the autism, adhd, mental illness (unipolar disorder), endocrine issues alongside another huge laundry list of issues
all wrapped up in a neat present consisting of a degenerative, long term, crippling disease.
Although to be fair… it turns out it’s all linked. A seemingly unrelated set of symptoms are all strongly correlated with this particular disease.
For instance, most people with EDS aren’t autistic. But if you are autistic, there’s roughly a 7% chance you’ve got EDS as opposed to around 1 in 5,000 chance within the general population.
Low T at a young age? 30-40% of young men with EDS have low T
and so on and so fourth. What my family and I always perceived to be “isolated” issues growing up, albeit isolated issues in abundance… They’re ALL linked to this disease
Even the dental issues I had as a kid, even the delayed milestones of development that my brother didn’t have re walking, motor coordination (was a floppy child ahaha). It finally gives closure
But I was REALLY hoping I’d be able to have some semblance of a normal life, and now I know that’s never going to be possible.
I need to talk to psychologist about my fears over the uncertainty of my future. My biggest fear is being unable to work, unable to have a life of my own etc.
In hindsight, it should have been obvious to me that I’d never be able to live a normal life… wishful thinking I suppose. I guess I’ll have to make due with the cards I’ve been dealt… try make the best out of what I’ve got.
I can’t help but think this would have been easier for me to deal with if I had been diagnosed at a younger age.
I’ll wake up tomorrow and get back out into the real world. I’ve had a solid two days of staying in bed… it’s enough now… I did need those two days though. I’m seeing my psychologist this Monday.
I did lose my job last week which further compounded things. Even though the two aren’t related, it still felt like 1+1 = 5. My workplace found someone willing to do my job albeit at full time whereas I was a casual who was studying full time at university. Full time employees are paid substantially less per hour
can’t blame them. If anything I can be happy that they kept me on for four months but only initially intended to keep me on for two weeks.
This isn’t to say I won’t do things I shouldn’t do… I’m going to travel, perhaps climb a mountain, go snowboarding etc. I want to have fun while I still can. I just need to get the physical pain/extreme instability under control first. Not possible to eliminate pain/instability, but with targeted resistance training it is possible to buy some time.
If I were to follow advice to a tee, I’d be restricted to brisk walks/physio with light resistance bands and tai chi etc. Even then I’d still be looking at progressive deterioration. That’s not a life. I’m going to make due with the cards i’ve been dealt. I am going to live on my terms even though i’ll never be able to live out the life I envisioned for myself (or anything close to it).
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Smart move!
Despair is a real bitch. It can make any amount of time seem unbearable.
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Yeah. A friend of mine once said “Acceptance is giving up all hope of a better past.”.
I tend to think he’s right.
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Thank you for listening to me 
If you don’t mind me asking. How have you been as of recent within relation to the cardiac pathology?
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I have never watched this guy’s videos, nor do I know who he is but, I do occasionally watch a comedy podcast (YMH) and in one of their “segments” they showed a video of this guy. He ordered/bought a pair of used women’s underwear and records himself reviewing them. He sniffs them and goes on and on about them. Why anyone would take advice from a loser like that…I do not know.
*Guy with the beard.
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Some ups and downs. Lvef is at like 40% after some complications. All of the technical stuff is good though (ekg, pulse, pressure, etc.)
I stay busy enough with my old tree cutting buddy doing equipment repair and welding a couple days a week.
Spend a good bit of time with my kiddo teaching him the ways of men from days gone by. Shooting air rifles, and about to get him started with archery. We also do some math & school work, and he surprised the hell out of me with some music he composed on his computer. So thats all excellent!
Wife is happy. She worries that I go too hard at everything, so I mansplain to her “Look honey, theres alot you don’t understand…”.
She hits pretty good too for a woman.
So everything is actually pretty good.
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Sounds like a good time!
My father did the same thing with me when we moved from Aus to the US. In Aus, neither parents were around much (career focused lifestyles). In the US my mother was still away most of the time, but my father had time to spend with us
So as per my request he purchased a BB gun and taught me how to shoot (BB guns are registered in line with real firearms in Aus… even airsoft guns… it’s ridiculous). Over time as I got older, he introduced me to pellet guns, then eventually real guns.
Those are some of the fondest memories I have with him. That and going fishing with him (rent a small boat with a motor attached) and going to gym with him was fun. He taught me how to lift weights… until my knowledge surrounding weightlifting greatly surpassed his and then I taught HIM how to lift weights 
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Perhaps this is something you should encourage him to pursue. If he’s composing music at a young age, could be looking at serious talent.
Not great. But categorically, LVEF of 40% is classified as mild dysfunction. Right on the cusp of “not so bad” and “moderate dysfunction”. When I was volunteering as first responder in Israel, sometimes an emergency physician would visually estimate LVEF without having a quantitative measurement on hand. Some of the sicker patients would purportedly have readings of like… LVEF 10-20%
Not to detract from your number as 40% is still an issue, but… is that number declining over time?
My number is 65% atm, will likely need to monitor it every few years for the rest of my life now.
I do. We (me & wife) both see music as an important part of life. I can’t read music though and have nil experience with any instruments so she handles that side.
Gotta go though. Those morels aren’t gonna pick themselves. 
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Every guy needs a motorcycle. 
